Ana Diaz-Ponce Living with Dementia Program -School of Social Work and Social Policy

1. “I have a great life - I just want to keep it, that’s it” - Lived experiences of using anti-dementia medication in mild and moderate stages of dementia Ana Diaz-Ponce Living with Dementia Program -School of Social Work and Social Policy Trinity College Dublin • North Sea Dementia Research Group • 13th Annual Meeting • Luxembourg, April 2013

2. Acknowledgements

3. Literature review (I) • Cholinesterase Inhibitors (ChEIs) and memantine are the current licensed drug treatments for AD • These drugs can provide small but demonstrable clinical benefits for some but not all PLWD. These include some symptomatic relief (cognition, function, global outcomes and to a lesser extent behaviour), however their ability to prevent or modify the progression of the disease remains unclear (Farlow et al2008) • Debate remains over the magnitude and cost-effectiveness of drug effects and over the interpretation of available evidence • Standard psychometric tools may not capture some of the drug treatment benefits and there is no evidence about what benefits are relevant and meaningful to PLWD and carers • Growing body of research arguing for inclusion of the views of PLWD and their caregivers in research on medication and dementia.

4. Literature review (II) EXPECTATIONS AS REPORTED BY PLWD AND CAREGIVERS • Stabilization of the condition: maintaining the person current level of functioning (Lindstrom et al 2005; Anderson et al. 2008; Smith el al. 2010), retaining the abilities than would help the person to perform the activities that he/she enjoyed (Smith et al 2010) & maintaining the PLWD ability to relate to their loved ones (Lindstrom et al 2005). • Slow down the decline and make it more gradual (Lindstrom et al 2005; Hutchings et al. 2010; Smith et al. 2010). • To a lesser extent to restore, enhance or improve lost capacities: memory improvement. PLWD more positive about expecting to improve than caregivers No miracle cure - but expectations of both groups beyond RCT evidence

5. Literature review (III) BENEFITS OF USING MEDICATION AS REPORTED BY PLWD & CARERS

6. Rationale for this study Evidence of the importance of understanding benefits from consumer’s point of view and the relevance of such benefits QoL as a broader context where benefits and their meanings can be best portrayed Most of the earlier studies have involved caregivers and have provided a fragmented exploration of this area At the time of starting this research no study had looked at the global experience of using the drug treatments The views and experiences of PLWD about the use of these treatments have been largely under-represented.

7. Research Questions • What are participants views and understandings of QoL: what matters most to PLWD and how does dementia affects QoL experiences? • What are the expectations, concerns, satisfaction and perceived benefits of using drugs for a sample of people recently diagnosed with AD? • Six months after being prescribed anti-dementia drugs, what are PLWD perceptions of the benefits of these drugs and what are their perceptions of their QoL? • Does QoL change over time and if changes arise what if any is the role of medication in contributing to such changes according to PLWD and their carers?

8. Methodology Exploratory qualitative follow up study Baseline in-depth interviews within 4 weeks of first being diagnosed and prescribed ChEls at a national Memory Clinic (14 dyads) Follow up in-depth interview 6 months later (12 dyads) Data collected via interview schedule and QoL AD All interviews taped and transcribed and data analised using Grounded Theory techniques Study approved by Research & Ethics Committees of TCD and St James’s Hospital.

9. The Sample - Profile • 8 men and 6 women all community dwelling • Aged 61 to 87 years • 10 lived with spouses, 2 with adult children & only 2 lived alone • 10 diagnosed with AD & 4 with mixed dementia • Mean MMSE score was 20.3 –(range= 25 to 13) • 11 prescribed Donepezil • 3 prescribed Memantine • Only 1 person stopped medication during the course of the study

10. Findings (baseline) HOPE • Sustained hope about dementia & medication: doing good, making me better, it has to work, “bursting the bubble” • Hope and faith in science • Hope and decision-making UNCERTAINTY & SEVERE DEMENTIA • Buying extra time NORMALIZATION • “We can live with that level” coping well & a good life • Living at home

11. Findings on Quality of Life* *Overall qualitative interviews and QOL AD scale suggest PLWD enjoyed a good quality of life at baseline. Also in general, reasonably good agreement found between individuals & caregivers re QoL although where differences arose caregivers tended to under-estimate QoL

12. Findings – follow up: • PLWD and caregivers felt the medication had improved the PLWD (i) confidence, (ii) communication skills (eg. language fluency, word finding), (iii) clearer thinking (eg. making choices, focussed) and (iv) cognition (eg. remember to pay bills, praying in Mass). Also some benefits related to behavioural issues (eg. anxiety, aggression) • As a result PLWD (i) felt better about themselves and more alike to the person they were before the onset of dementia; (ii) returned to /or had greater enjoyment in activities they had avoided or felt fearful about after onset of dementia; (iii) related better with others and were more willing to be socially engaged and involved; (iv) and felt more independent and autonomous. BENEFITS – Half reported benefits – some in areas not always included in RCTs

13. OVERARCHING THEMES: NORMALCY & AGENCY PLWD “Making me more or less a whole person again” “I am back to my life, meeting my friends, doing the things I used to do before” “I go into town (…) I go everywhere, and I wasn’t going before! (…) 6 months ago I didn’t. We use to go in the train everyday but (…) he (husband) was dragging me out, otherwise I would have been dead, I would have been crying here at home, (…) I feel now that “I” want to do it” “It is all about control, you know about decicing on what I can do or cant do , this kind of thing … what time do I want to eat, or do I want to eat?, or what I want to eat, Or do I want to … just the small things (...) They (my family) used to play a major role which I think is becoming less, in the way that I am now more independent, and they seem to be ok with it.” Caregivers “She is happier and this is helping everything else”. “I think it (picking his stuff in supermarket) makes him feel more normal” “She seemed to be mentally stronger and more like her old self. Her sense of humour (…) she definitely seems more upbeat. She is not getting as anxious” “She is not someone with Alzheimer’s, she is just my mum, she is great with advice”

14. STILL AMBIGUITY AND LIMITS OF BENEFITS ALSO REPORTED • “I should need to go for a couple of months out of the medication and see... for being able to answer that, to see the difference whether I would still progress or I would mantain or whether I would regress, you know, but overall I suppose the medication has helped, it has to be” • “Yes the medication has helped (...) but also I have been doing a lot of thinking myself” • “I have more energy than I used to, but there is not that much really to use it on, let’s put it that way. I feel more “get up and go”, I feel more vibrant but the vibrance is none, it isn’t there, you know I haven’t been ... there is no many opportunities to do”

15. Where no benefits were evident - • Hope “it may still work” • Ambiguity “It could be worst if did not take it” • Fears of stopping the medication • Compliance with prescription These had a great effect on how participants constructed satisfaction and on decision making about continuation

16. Did QOL change over time? Were there differences between PLWD and caregivers’ perceptions of QOL? What is the role of medication in contributing to changes in QoL over time?

17. Perceived benefits of Drug Treatment and PLWD and Caregivers’ Perceptions of QoL over time

18. Discussion • Most claimed they enjoyed a good QoL at baseline and their QoL had improved over time • All but one continued to take drugs at follow up and half believed drugs had benefitted them not always in areas previously reported in literature • Where benefits occurred, QoL as measured by QoL AD always improved but QoL scores also improved in some few cases (N=2) where no benefits were reported

19. Conclusions • Relationship between QoL and drug efficacy complex and difficult to disentangle • Hope and fears were important themes in the medication experience, and related to expectations and decision making. • Use of medication improved mood, communication, functioning, cognition and thinking and in terms of QoL promoted normalcy, greater agency & control, and independence. These are areas not always addressed in the QoL scales • PLWD felt medication treatment was useful but also were ambiguous about the extent of the efficacy. QoL improvement was multi-factorial (medication and other non pharma factors) • QoL overtime indicate that CP tend to evaluate QoL poorer than PLWD, but present similar trajectories

20. “The quality of my life is mine to determine, not necessarily yours to measure or understand. If you really must know about the quality of my life, just ask me! My answers to your questions won’t be reliable, and won’t be valid. But they will be true for me”. Richard Taylor (2007) Measuring “the Rubs” of My Quality of Life Alzheimer’s Care Today

21. THANKS FOR YOUR LISTENNING